Sure! Well, I was an architect major at school in Philadelphia. My colleagues, my peers would have beautiful models with staircases and windows, and I’d have crummy pieces of paper, I was terrible at it! But I started photographing staircases, lighting, windows, building, and building these 3-D models, and fell in love with photography, moved to New York, and went to the School of Visual Arts! And when I finished my studies in filmmaking and photography, I started my own studio right away, and moved into fashion photography right away. I was a fashion photographer for my entire career as a commercial photography. I also lived in Milan and Paris for many years: I worked for the house of Yves Saint Laurent, a portrait I did with him is in all of his boutiques worldwide. I had great clients, like Revlon, and I was photographing these beautiful models like Claudia Schiffer and Cindy Crawford, and someone was always there telling me who was beautiful. And that was frustrating to me, because I see beauty absolutely everywhere in the world. So that’s how it started: creating an opportunity to see beauty where it exists, in technicolor. And it’s extraordinary.

Yes! Very exciting. I was doing a casting here in my studio - this was at a point when I was SO frustrated, because I was always told where beauty existed. So I’m leaving my studio from a big casting for ELLE magazine, I think I saw every model in the world that day, I was walking down Park Ave on a break, and I saw a beautiful young woman with white, white WHITE hair, pale pale PALE skin - she had the genetic condition albinism. Albino is the common term. She was so beautiful, and I instantly knew I’d never met a model who’d looked like this. This beautiful child was stunning, yet never considered beautiful. And when I went to do research on albinism, I didn’t know where to go. I went to medical textbooks, thinking it would be the most obvious place to find these images. And the medical textbooks, when I opened it up to albinism, were so horrible. Photographs of people in cancer clinics, or children up against walls in medical clinics, in their underwear, with black bars across their eyes. There was nothing but sadness or despair in any of these images. Such a strong contrast to this gorgeous kid waiting for a bus! So I saw an organization called NOAH - National Organization for Albinism and Hypopigmentation - and there was a support group for people with albinism and their families. I was so relieved and delighted to see there was an organization I could call. SO I did, and I said “I’m a fashion photographer, and I want to show the world the beauty of albinism, this will be amazing!” And they said “Go away!” And I”m a New Yorker, I’m pretty persistent, and they made it very clear to me there was a fear of exploitation. Every time there was an article about a person with albinism, it was usually sensational, usually exploitative, or negative. And I said “I believe you! I can’t find a single positive example anywhere, and I’ve been searching and searching! So let’s do something strange here, let’s form a nontraditional partnership: fashion photographer and genetic support group. Together, let’s partner and create a photo-essay to celebrate Albinism.” So POSITIVE EXPOSURE was born that day. In walked the first girl I was going to photograph - Christine, with long white hair, pale skin, 5 feet 9 inches. But she walked in slumped over, with zero sense of self esteem, as a direct result of the bullying, teasing and abuse that she suffered every day as a result of her difference. And it broke my heart to see this gorgeous kid that way. Well, she was so gorgeous standing there, I was thinking “How can I photograph this kid?” And I thought that I would photograph this girl the way I would any other supermodel - the fan went on, the music went on, and I said “Christine, look at yourself, you’re MAGNIFICENT!” And she saw what I saw. And she exploded with this smile that lit up New York City. It was amazing. She desperately needed to change the way she saw herself. And her community, her peers, her family, needed to change the way that they saw her difference. So she created the philosophy right there and then that drives POSITIVE EXPOSURE 20 years later. And that philosophy is “CHANGE HOW YOU SEE. SEE HOW YOU CHANGE.” That’s the name of our book, and everything we do is based on that. And that’s how it started!

As a result of creating POSITIVE EXPOSURE, you left the fashion industry and began this project to transform perceptions of people living with genetic, physical and behavioral differences, both among the public and health care professionals. You’ve taken thousands of photograph portraits of people who are not only genetically diverse but also those with rare cancers and more. What have been some of the most rewarding reactions to your work?

Wow. SO many wonderful, wonderful experiences. You know, just to clarify, leaving the fashion industry didn’t mean that I’d left the beauty industry - this will always be about beauty. Early days, every day something fantastic amazing and extraordinary happens. When you’re photographing a person, and they are glowing, bursting with energy and joy, seeing themselves in this reflection, it’s wonderful to look over their shoulder and see their partner, or best friend, or partner, or child, to see them glowing even more - because they’re seeing them how THEY see them. And that’s SO important. The first images we created, starting with Christine and the albinism community, was a cover story for LIFE magazine, called “Redefining Beauty.” So I was at a conference for kids with albinism, this was early days, in the UK, and there was a young lady who was 14 years old and didn’t want to be photographed, and her name was Christina. And her friends at the conference, even teachers, had made fun of her at school. And every time I was photographing somebody, Christina would be walking down the hall, watching… she SO wanted to be a part of it! And I begged her to do a photoshoot, and at the end of it, she said to me, “FINALLY I can be proud of my difference. I realize, though, that the hatred and abuse I experience every day will never disappear. But what has disappeared was the hatred I felt for myself.” And I NEVER looked back. I stopped all my commercial work that day, and just kept looking forward. And there are so many stories like that.

I received a lot of awards for the LIFE magazine piece. And one of the greatest honors I received was the Art of Reporting award, by the Genetic Alliance. They are a coalition of all the genetic support groups worldwide. It was a great honor, I was thrilled, and at the ceremony, the president at the time said “I’m looking at all these beautiful photographs of albinism, and I’m seeing a universal message here, that there is a beauty here. Would you want to photograph some of these other genetic conditions, to show the world how beautiful they are?” And I thought “What a great idea!” She said “Our next conference is going to be for kids living with a Chromosome-18 anomaly. Could you come to that conference?” And I said “GREAT!” But I’d never even heard the words “chromosome” and “anomaly” in the same sentence before! I didn’t want to look ignorant, I went back to the medical textbooks reluctantly, and I looked up “Chromosome 18 anomalies,” and I found images of stillborns, images of kids in doctors offices, kids with trachs, feeding tubes and mobility issues, and I thought comparatively albinism is so easy! These were images of sadness, of sickness, and I’m thinking “I’m committed” and I went. I walked into the auditorium with these images burned in my head, and I was instantly surrounded by kids screaming with laughter. There were kids with trachs, feeding tubes, mobility issues, but they were smiling and laughing. And that changed everything. It became the most beautiful, extraordinary - finding beauty in diversity. And that’s exactly what we did. We’ve been collaborating with advocacy groups worldwide, looking at the beauty of diversity. We just did a huge program with NYU-Langone and their Transgender community, telling the same stories of these incredible people, giving them a spotlight, a platform, letting them know they are accepted, and that all differences need to be embraced and celebrated. The idea - this is the bottom line - to throw a party. And the only way it’s going to be a great party is if EVERYBODY is invited and welcomed.

Incredible. It was incredible! And how Joanna and I connected was at the Genetic Alliance, their big annual conference. We had a huge POSITIVE EXPOSURE exhibit, and she’d just completed a film called “In the Family” about the BRCA gene, which she carries, which has elevated risk of ovarian and breast cancer. And she was going to the theatre to show her film to the audience, and she started walking through my exhibition, and she grabbed me in tears and said “My disease is invisible, yet I’m in EVERY ONE of these photographs. We HAVE to make a documentary.” And we did! It took us five years. We filmed here in New York and also in Kenya. The process was extraordinary. We also filmed in Education City in Qatar. It was incredible, working with the medical students. We had to make the film half an hour, because we felt it was SO important for this film to be shown in schools. We had to leave out the Middle East, but we kept Sarah’s story, who was born with a birthmark on her face from Sturge Weber syndrome, and Jane, who was in Kenya, who has albinism, and wanted to start POSITIVE EXPOSURE Kenya. There’s a lot of discrimination against people with albinism in African countries: currently, witch doctors in East Africa ask for the bones of albino children and adults to make a potion that will make you rich. So education is a huge factor in helping support their community, letting people know that they aren’t special or diseased or have more valuable bones, they are just human beings like everyone else. The documentary has been screened in tons of schools, it won the audience choice award in the Chicago International Film Festival, and a lot of festival accolades. It’s a message we all need to hear, about seeing beauty in diversity, not being afraid of it, but embracing it, because it changes everything.

A big part of POSITIVE EXPOSURE is bringing the photography, the art, to people. Beyond showcasing the work in galleries, or showing a shortened version of ON BEAUTY in schools, what are some additional ways you are looking to spread the POSITIVE EXPOSURE message?

Oooh, good question! Well, one thing is we have a program on our website called “The Pearls Project” - as in pearls of wisdom. It’s an online blog platform for all of our ambassadors that we photograph to talk about life from their unique perspective. Sometimes they talk about their condition, but what they really talk about are movies, and books, and best friends, and music videos - creating opportunities to see beyond disease, beyond diagnoses, to the humanity that we share. Everything is free. You can go to that section of the site, request registration, and then you can interact with our ambassadors. It’s starting a dialogue about diversity, about difference, from the perspective of someone who experiences difference every day. And they’re using their passion to write, to photograph, to create music. It’s really great. There’s another program we’ve created called FRAME - which stands for “Faces Redefining the Art of Medical Education.” FRAME is an online web-based film library which each film talks about a certain genetic condition or syndrome or diagnoses, but it presents all the basic hallmark characteristics of the condition, but as presented by someone living with that condition or their families. And these films target medical students in training, like nursing students, genetic counseling students, etcetera. And it creates the opportunity to place - front row and center - in medical education HUMANITY. Making sure that med students understand from the get-go in their medical education that it’s never WHAT you’re treating, always WHO you’re treating. Nobody wants to be seen as a disease or diagnoses, but always first and foremost as a human being.

Mm-hmm. I think we’ve made major strides, but we have a long way to go. But with these amazing models walking the runway with Down’s Syndrome, and there’s an amazing runway called Winnie Harlow, who has a condition called Vitiligo, when you lose pigmentation in your skin, and she’s becoming really famous - not because of her vitiligo, but because she’s beautiful. She’s changing how the world sees difference. But we have a long way to go. As consumers of the products that magazines are selling, I think we’re much more informed. We’re learning more that the model sat in front of hair and makeup for 6 hours, and then got retouched by one of the best photographers in the world - it’s a little unrealistic at times. As consumers, we’re more informed, better educated, and we’re going to start demanding diversity and representation in media, in film, on magazines, across the board, onstage. POSITIVE EXPOSURE exists, and partners with so many other organizations, all with a mission to see that happen. Because this is a human movement.

OOOH, good question! Check our website for upcoming opportunities - I travel the world, I just got back from India, where I was doing a photoshoot - in collaboration with an organization, photographing people who have undiagnosed conditions. Because when you have a diagnoses, you have a network of community, of specialists, but when you’re undiagnosed, you’re alone. And I’m going to Germany on Tuesday, to speak at a German dermatology conference. And then tomorrow I go to Minneapolis, to photograph - they just built a new dermatology clinic at the University of Minnesota Masonic Childrens Hospital, so I’m going to photograph a bunch of kids who use the clinic, and they’ll be a permanent installation there! We don’t really solicit anyone - people can always contact me with ideas, or if they want me to speak at their advocacy group, and my answer is always “yes.” We try to not do one photograph at a time, but if there’s an individual who’s working on an advocacy program, we try to collaborate there, as opposed to having photographs taken. It has to have legs, to grow, to help change the way the world sees difference. Our calendar is up on our website at all times, we’re always updating the calendar - after I go to Germany, I’m going to Portland for a conference called ANCOR, for people with intellectual disabilities, and then I come back, and then I go to Australia and New Zealand! It's so much fun.

It hasn’t really, to be honest. I’ll tell you why: we’re not a real traditional nonprofit organization, where we have really high overhead, this big space, we’re very transactional. A lot of the work that we do, we fund our programs through honoraria of me speaking around the globe, community-based projects, grant proposals. Liz Grossman, our executive director, she’s five grants successful for five grants written, she’s pretty amazing. Before Liz started writing grants, I wrote 19 grant proposals, and I got 21 grant rejections - it was HORRIBLE! But we partner with so many people, and what we offer is we have so many friends across cultures, across disciplines, across medical, art, teaching - they are all great friends, because this is about all of us. We’re shining in a position where people really believe this is necessary - not just for their own kids or families who are affected, but for EVERYBODY. Everybody deserves to look in the mirror and celebrate what they see. EVERYONE. So my dream, in this last 20 years, is to create a public gallery, performance, film screening space, where everyone can come to, and be safe, and be celebrated, and be inspired, be empowered and empower others by sharing their talents. We need to all lift our heads up, and have a conversation all together, by creating a permanent space where its purpose is to invite everybody to the table, so we can all understand IMMEDIATELY that we are all so powerful in our community. We are going to be inspired. The big conversations will create big ideas. And right now, our only restrictions are our imaginations. If we can all see gorgeous representations throughout the world it’s going to cause an earthquake. And guess what we just did? We just signed the lease for POSITIVE EXPOSURE 109 - on Museum Mile in Harlem. We are going to open up in the fall. On 109th Street and Central Park, on Museum Mile, which includes the Cooper-Hewitt, the Guggenheim, right across the street from the very north corner of Central Park. It’s going to be a multimedia gallery, performance space, lecture hall, workshop space, creative workspace, computer labs and classrooms and library -and we are fundraising like animals at the moment to make the space accessible, with ramps so everyone can enter with the same experience. No special entrances for anybody, everybody enters the same way! We are putting a new floor in, and we’re doing this all with zero dollars, so we did a huge campaign, and we’ve raised $50,000 of our $100,000 budget, but we’re trying to get the third floor fully accessible. But I have the feeling the money is going to come. Believe it or not, it’s the first time in the history of New York City that a space celebrating diversity and accessibility exists. It’s right there.

Well, I’m going to a conference in Rochester, before I go to Australia, to present the 3 new films we created, FRAME films. There’s an organization called the With Foundation, and they gave us a grant to create 5 films, and instead of just tackling 5 films, we made longer films - one on intellectual disability, one on autism, and one on cerebral palsy. And we’re going to present them in Rochester at a conference for people with intellectual disabilities on the 5th of May. The organization is the American Academy of Developmental Medicine and Dentistry (AADMD), in collaboration with one of the coolest foundations on the planet, called the Golisano Foundation, and this is why - they created a program with the Special Olympics that gets every single athlete to get an eye test, an ear test, and dental test, to make sure their teeth are good, because some of them may never have had that opportunity. And after each test, by volunteer physicians, they are treated right there and then - at the last world games, when I was there, you could hear kids screaming with joy, being able to hear their coaches for the first time. And at the very last tent, these kids get the coolest pair of sneakers custom-fitted just for them, thanks to the Golisano Foundation. It’s incredible. Those three films will be shared on our website, under FRAME, after the big screening. A lot of the kids we photographed for the film will come to the premier, on the red carpet, no less! And I’m the paparazzi. I’m so excited. So those 3 films will be coming out soon, and we hope to work on additional ones after that - so stay tuned. Our website has a lot of what we’re up to coming up, on our “About” section, a bit more in-depth visuals. You’ll see the trip to India, some of those images up there, from the Faroe Islands in December - they reached out and said “We have 55,000 people living on these 18 islands, but we’ve never had a dialogue about disability or diversity, can you help us make an exhibition on persons with disability?” So I went in October, I took a ton of photographs, and then for the Persons with Disability exhibition in Norway at the Nordic House, I went for that on December 3, Persons with Disability Day. We did the same thing, a community-based exhibit, for the Sunshine Coast in Australia. And I'm going back again to speak to medical students in Melbourne, and the exhibit is moving down there, and we're going to be adding more photographs of people in the local community with the help of photographers there - helping tell stories and create platforms.

You have to be very careful. The greatest thing is to create a very safe environment, and make sure the images are used to really celebrate diversity, without restriction. The exploitation is so far removed, because in the old days, when they would photograph a kid, those were exploitative photographs -with a black bar across the eyes to protect their privacy. But now families chase me, asking for photographs, because nobody wants to be seen as a disease or diagnoses. ALWAYS as a person. So the exploitation is gone, because we aren’t selling product, we aren’t selling images - the images are given to RAISE awareness on a big scale. To create opportunities so we can break through the exploitation’s, the negative things of the past. To see the beauty of these individuals. All the exhibitions we do around the world, whether in a fancy gallery, the Smithsonian, or a mall - it’s always faces mounted on highly mounted glass or plexi. So as you approach the piece you see the energy of the eyes, the movement, their face, and you’re also aware of your OWN reflection. It goes from being about THEM to being about US. And that’s so important. That we know it’s about US. ALL OF US. And there you have it.

Everybody looks beautiful in the right light. And everybody - going into countries where I don’t speak the language, I don’t speak Russian in Moscow, but everybody responds to “WOOOOWWWW! AMAAAAZING!” I don’t take photographs. It’s always a collaboration. Everybody has a connection, a moment. I’ve never photographed anybody who didn’t connect. No matter what their cognitive abilities were, they can always connect with your approach - with love, with gentleness, with caring. I don’t take photographs, it’s ALWAYS a collaboration. Whether someone is verbal or nonverbal, has severe cognitive issues, there’s always a connection, that beautiful amazing way to connect with someone. Always always always. And you’re always questioning your own biases. If you’re asking if someone is aware that you’re in the room, I can assure you that they are. Just today I was photographing a young lady, Julia, she was nonverbal. Her mom and her sister were there. And as we were photographing, she started communicating with me using her hair - she was drooling a bit, using her scarf, and as she was daubing herself, I could tell she didn’t want to have that in her photograph! She would look away in a giggling way, engaging and playing. She was communicating in a way that most people don’t have the ability to do. So you just have to be ready for that. People are there in the room, always, and it’s all in how you approach it. It's extraordinary.

STEM is really important, all that’s really important, but I’m looking after the kids who are here right now. I’m surrounded by these kids, these adults, and I’m just looking after these beautiful faces who are in front of me right now, and that they have an opportunity to look in the mirror, and love what they see.

And for sure on our website - and sign up for our newsletter, which we send out quarterly, it’s always very image driven with stories and links. You can sign up on our website - it’s all there. We’re a good team, and any suggestions or thoughts, definitely reach out. There are so many ways to keep in touch with us. And as soon as our doors are open, POSITIVE EXPOSURE 109, you call, you can set up an appointment to come in, it will be open to the public just with an appointment to set that up! We are all about celebrating the richness and the beauty of human diversity.

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